Ughh…

Ugh…I don’t want to even write these words.  I really don’t want to write these words.  I kind of don’t even want you to read this.  I mean, I do, because I believe these words are vitally important. I just cringe thinking about me, Claire, being the one who writes them.  The thing is, I’m not so sure there are a lot of other people out there who could write them…

This weekend was spent trying to weasel out of this post.  We recently got a kitten, and that poor white fluff ball has tried way too many times to free himself from Lucy’s excited, strangling grasp—that was me these past few days.  Wriggling and writhing around, manipulatively trying to make deals with God, and myself, trying to figure out if they could be written any other way.  They cannot…….

Cancer is good.  There.  I said it.  Cancer is good.  Before you (rightfully) freak out, let me give you my credentials:

-Ellen, my younger sister, spent eleven years of her life fighting
the most aggressive form of brain cancer (Glioblastoma Multiforme).  It is characterized by massive, rapidly-growing cancerous tendrils that break through brain matter, wreaking all FullSizeRendersorts of havoc.  It is treatable for about six months, maybe a year if one is lucky, but once the cancer is detectable and noticeable it is too late.  Because the entire brain is filled with those cancer highways, you’d have to nuke/treat the whole brain with insane amounts of radiation and chemo.  Ellen lived for eleven years after her diagnosis, and the story of those eleven years will be told here later on, another day.  But believe me when I tell you that before I ever got cancer, before I ever got cancer a second time, I knew all too well what cancer meant.  I grew up, alongside my brother and sisters, at UCLA medical centers.  I made friends with children who died—Ellen’s friends.  I saw staples covering her entire head.  I remember the hell of waiting for scans, and I remember the glory of that one PET scan that miraculously revealed remission.  I remember the “throw-up bucket” my mom had to keep in the car for her (I later had my very own).  I remember everything her treatment forever robbed from her: the ability to read and write, the ability to walk correctly and eventually the ability to walk at all.  I remember the coma and not knowing if I would ever see her, or tease her, again.  I remember her waking up and having to painstakingly relearn how to do life—she never got the time to relearn it all.

FullSizeRenderThe cancer came back, and she made the decision to die at home.  I remember walking out of that appointment.  I’m pretty sure it was that appointment; they all got blurry.  You know those parking structure posts that rise out the concrete floor, to protect the elevator patrons from getting hit by a wayward vehicle?  They look like tall concrete Minions.  I remember hopping over them when we got out of the elevator, and Ellen cracking some sort of joke, like we hadn’t just been given her death sentence.  I think it was about underwear—a favorite topic of ours…  I remember how quickly her sobs about her purpose and her death could turn into joyful, moan-y laughter.  Usually because I sang a song about baby powder in private places.

I remember being a care giver to a younger, dying sister, and to my other two siblings whose lives were also in absolute upheaval.  I remember yelling at Ellen to help me get her out of bath, to “use your legs!”  The slipped disc in my lower back is still proof it all happened.  I remember that God-damn bell!!  When she was confined to her hospital bed in her room in the back of the house it was all she had to summon someone for any needs or wants she had.  Can you imagine being totally present in your mind, and having no voice?  I remember how mortifying it was for her when she got her period and someone else had to change her pad.  Especially when she was alone at Daddy’s because I just needed a break and stayed at my mom’s.  My poor poor family…  And then there were the last days.  The graying skin, the deadening eyes, the scents, the not eating or drinking, and the 3-day coma that eventually ended with a loud last breath.  I was the one who checked her eyes at 4pm and saw that she was indeed gone.  And we all wept so bitterly.  I’m weeping now.  It’s still the most beautiful thing I have ever witnessed.

IMG_5674-Myself.  Compared to Ellen I had easy cancer—Hodgkin’s Lymphoma.  The first time I was 19 (three years after Ellen had died), in one of the top art programs in the US, and I was taking a little summer break, evaluating life back home in southern California.  I had a summer physical scheduled with our old-time family doctor, and I almost walked out of the exam room without mentioning the large lump on the left side collarbone/lymph node area.  Thank God I did.  Within a week I had been scanned, lumbar punctured, biopsied, and had a port-a-cath installed.  Stage 3, six months of chemo, great prognosis, great response to chemo, relatively “easy.”  If you’d have asked me during those six months if they were easy I would have screamed “hell no!”  But compared to what followed—yes, they were a breeze.
I moved to Denver four months after ABVD chemo ended, met and married my man within nine months, had a beautiful little bungalow on South Pearl Street, an obedient Great Dane named Winnie, loving friends, a great church, camping and cabin trips, and then a beautiful bundle of joy (they weren’t sure I’d be fertile after the chemo but there was no trouble in that department).  We named her Lucy Pearl—“bright pearl.”  I was in heaven.  When LP was five weeks old, the day after Easter, I went in to get my routine scan results (again, waiting for PET scan results, waiting for results of any kind are enough to make anyone an addict, I think.)  “It’s back.”  I could tell my oncologist would have rather eaten horse shit than had to utter those words.  I had just spent the previous three minutes talking his ear off about how much fun I was having with my newborn, then he has to tell this new, 23-year-old mama that she has cancer again.  It’s almost funny.  I’m singing that Alanis Morisette song in my head right now…

Three months of ICE chemo to kill the active, breeding cancer cells.  They then harvested my own stem cells and blasting them with chemo stronger than a body could withstand, while I moved into the 11th floor of the hospital for over a month.  Where they proceeded to kill me.  No really, they want to get your blood/body numbers as close to zero as they can, make sure you are almost dead, and then pump your nuked stem cells back into you at the opportune time, hoping the clean cells graft in and recreate your immune system—recreate you (they refer to it as your new birthday, you are that new).  Oh, and did I mention I wasn’t allowed to see my daughter at all?  #sterileenvironment.  I saw her once.  They made an exception because every time I awoke from my drugged-out state I would wail and scream for my new daughter, my bright light, or I’d hallucinate that she was in my arms.  So they let my mother-in-law bring her once; she didn’t know who I was.  How could she?  I’d been gone almost as long as I’d been with her; and now I looked like the living dead.  She was wearing that white, ruffly jumpsuit from Baby Gap.  I remember touching her fat thighs and trying with all my might not to burst out into tears, because then I’d be the scary hairless lady who ALSO cries.

On another day, at another time, I will share more about thoseIMG_5981 months.  And when you hear it all you will not judge me for becoming dependent and eventually addicted to Oxycodone, Adderall, and everything.  But know that I have written that letter to my child, the one where you think death will actually happen.  I’ve written that letter to my husband, the one where you tell him all the things that only a mother could know about a daughter, in hopes that it will make the transition to mama-less a little easier.  Again, it’s almost funny, like a letter could somehow soothe the ripping out of heart matter from ones chest… 

Know that I know what it’s like to have a grabby seven-month-old want to rip out the tri-lumen port dangling out of my chest.  IMG_5682I know what it’s like to be absolutely certain I would never get pregnant again.  I still throw up on the spot if I get that saline tongue taste that accompanies a flush into an IV to get it moving, and hospital soap will make me gag.  One of my pajama shirts still has the gooey stuff they used to keep heart monitors attached to me.  And to this day I have significant bone, muscle and nerve damage from all the chemotherapy.  I can’t feel some parts of me, and other parts I can’t not feel—all the time.  I ache always.  Sometimes getting dressed feels like it’s the only thing physical I can do in a day.  Sometimes pulling a bathing suit over my hip and shoulder bones hurts so much it takes my breath away.  My children know not to climb on my legs, on my body at all, because of how tender my bones/nerves are.  Up until last month I still had to wait for scan results, and up until sobriety I was really happy I had Attivan and Oxy to help with the waiting for those results.  Now I just do a lot of meditating.  And I ask for a lot of prayer.

The next few posts are going to be about cancer and how I have come to believe that it is good. And now maybe you see why I, Claire, had to be the one to say it?  For twenty-seven, I know a lot about oncology.  I think for fifty-seven I know a lot about oncology…  I won’t claim to know a lot about life or a lot about God, but oncology?  I’ve got you covered!  We have all been affected by cancer (any chronic illness, really) in some way by this point.  We’ve all had to feel the mind-and-heart-fucking emotions that this horrible, uninvited, murderous houseguest unpacks in our reality.  Maybe it’s time to make a little peace…

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6 Comments

  1. Love you Claire old girl….old soul Claire. I remember you sitting in our living room, many many moons ago in our comfortable, big red chair!!! WOW…..you’ve come a long way baby!!!!! God is good…..all the time!!!!

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